Because Life with Still's Can Still Be Life

Article: Four Year Old Girl Refused Funding For Still’s Treatment

It saddens me that for once Google has alerted me to a ‘Still’s Disease’ article and it has to be something like this. Georgiana, age 4, has Still’s Disease and has recently had her funding application to start Tocilizumab turned down by the PCT after a two month wait.

From the information given in the article, she has tried one other medication that didn’t work and the PCT are arguing she should try others before moving on to Tocilizumab, which is one of the newest treatments available and has a good record at treating Still’s Disease successfully. I can see the point in trying other drugs first; as I tried to show in my Treatment section, Rheumatologists have a certain pattern they follow when prescribing drugs to try. On the other hand, it would seem cruel to try Georgiana on drugs like Methotrexate and the other highly toxic DMARDs usually turned to first, when their side effects could also be damaging to her health. But there are a whole host of Biologic options to try these days.

One of the best things about the Biologic drugs (which aren’t completely without serious side effects) is that they are tolerated well and have a good success rate at keeping disease progression under control – so I feel for children especially, we should be starting them right away, before any further damage is done by both the disease and other medications. Georgiana currently seems to be taking only a high dose of steroids and her mother is already concerned about the longterm side effects after just months. Treating her properly now could save her from becoming someone like me, who has been on them for 14 years and will probably need treatment for the effects of that on my body too, in years to come.

I do wonder what the drug is that the PCT want Georgiana to try instead. How someone can say it is ‘unlikely to work’ and will ‘waste another 8 weeks with uneccessary treatment’ is confusing to me though. I don’t think anybody can be sure what drugs are going to work for any one person – Cyclosporin proved a wonder drug for me, for example, and I barely hear of anyone being prescribed that these days; maybe it just doesn’t work for many, but I’m glad we at least tried – it gave me almost ten years of normality. No treatment is a waste of time, although it is understandable that some may feel that way.

What the main complaint seems to be about here is the frustrating way we have to go about treating Still’s Disease and similar conditions – it’s a game of trial and error and unfortunately that means a lot of ‘wasted’ time and waiting, which must seem a helluva lot longer to a 4 year old and parents that just want to see her well. You have to try different drugs and it can take months before it becomes clear whether they are working or not; before you might have to move on to another and start the process over again. There isn’t any one drug that a rheumatologist can prescribe, confident that it will absolutely, definitely work. I’ve been doing the trial and error thing for over 18months this time round, I waited almost 6 months for my funding and there is still no guarentee, even with a drug like Orencia – just as there is no guarantee that Tocilizumab is the drug for Georgiana.

But what I do agree with is that if her rheumatologist thinks Tocilizumab is her best option, (and he wouldn’t have applied for funding otherwise), then she should at least be given the funding to try. Because, by cutting out trying other more old-fashioned drugs with all their risks, hopefully you will be able to fast track children to the road to recovery at a lesser cost to NHS.

I do hope they fight the PCT’s decision and that they get access to the Tocilizumab quickly. But I also hope that if they are unsuccesful, or it looked like it would take time, that they won’t completely dismiss other treatments thinking that this is the only one for her (I know how easy it is to be set your heart on one, Anakinra anybody?). Most of all, I hope they do find the drug that will turn little Georgiana’s life around, to give her the childhood she deserves and soon.

My Still’s Life

My name is Laura and I was diagnosed with Still's Disease at the age of 19, with previous diagnoses of Dermatomyositis at 14 and Post-Viral Reactive Arthritis at the age of 3. Life is a bit of a rollercoaster to say the least, but I'm happy to say that I have had my fair share of highs with the lows. I have currently been off work for over 18 months due to a severe flareup and was getting bored, so I thought that I would try and put my mind to something constructive.

I have tried numerous drugs to treat my Still's over the years, including:

Unfortunately, having one autoimmune disease can lead to other health problems and I have also developed Hidradenitis Suppurativa, Gastritis, Anaemia of Chronic Disease, MVP, PCOS and Migraine, which I post about from time to time.

Happy reading :)

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Food For Thought

Toughness is in the soul and spirit, not in muscles.

~Alex Karras

The block of granite which was an obstacle in the pathway of the weak, became a stepping-stone in the pathway of the strong

~ Thomas Carlyle

Strength does not come from physical capacity. It comes from an indomitable will.

~ Mahatma Gandhi

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'